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This Week...

June 27, 2013
***I wrote this post over the weekend and I am now just publishing it. FYI if you subscribe to posts via email they will often post to your email a day later.  Enjoy!***

This week, it felt like a century!

Last weekend, Father's Day weekend, began with Drew declaring that he wanted his parking spot back.  In other words,  the eight yards of mulch that has been sitting at the end of our driveway since the end of April was getting moved.  Reality, four yards spread, four more still to go.  Sleep was practically extinct last weekend as Miss Lucy's issues kept us on our toes.

Sunday night was not a great night for our girl and come Monday morning three of our four kiddos had to be up and out the door by 7:30am for camp.  FYI, Monday morning was the only morning all week that the kids did not need to be shaken awake.

Lucy had PT later on Monday morning which did not go very well.  Lucy was pretty much out of it and sleepy.  Afterward our infusion nurse came to see us around noon for his weekly visit.  After taking a set of vitals he looked at me and said, ", when are you bringing her in?".   Lucy's vital signs were not her norm nor was her neurological status, in all honesty it she had been like this for a while.  I sent a quick email to the good doc and asked him to call me, minutes later I flew out the door at 1:30pm to pick the kids up from camp, leaving Lucy with our nurse.

The good doc and I finally connected a little before 3pm, apparently he tried calling our home while I was out picking up the kids.  I first told him that Luc was breathing and her heart was beating, to which he jokingly said, "...then in my book she's fine".  However Lucy's vitals were showing the symptoms of Cushing's triad, which warranted a trip to the ED for a stat head CT.  I asked him if I should pack a bag, his response was, "Don't you always have a bag packed?".  Stat as in I had to first pack up eight hours worth of meds and supplies, throw some essential survival things in my hospital suitcase, and call my husband out of a meeting to tell him what was up.  I had to find someone to watch my other three kids, and wait for the girls to finish getting their hair cut which was occurring simultaneously in our kitchen as I was scrambling around doing said things.  Last, but certainly not least, pack a sleeping Lucy up, get her and her wheelchair in the van, and drive her to DuPont all before 4pm because a certain Dr. R was trying to leave around then to coach a baseball game.  Yeah, I told him 4pm was going to be pushing it, but I would try my best.  For the record, we arrived at the hospital around 4:40pm and it was storming so game cancelled.  Dr. R came to see us and before we could even see him we heard him saying, "if she tells me to go home then I'm sending her home:)".  I said if back to him, "if she tells you to go home, I will gladly take her home".  Lucy has been known to tell him where to go a few times in her life :).  Sadly she didn't really wake up when she saw him.

Not sure what exactly we were going to do for our girl, we were admitted to our usual unit in the hospital sometime around 11pm Monday night.  Apparently Lucy picked a busy night to be admitted.  The night resident had the overwhelming task of putting all of Lucy's med orders into the system.  Needless to say there weren't any meds sent over from pharmacy until after 1am.  To quote the good doc yet again, "Lucy has more meds than Walgreen's"!

Tuesday morning came early as did morning rounds.  Dr. R and I had a heart to heart that I detailed a little about in my previous post. Our's painful!

Drew came the hospital late Tuesday morning after dropping the kids off at camp and swinging back home to gather more meds, supplies and TPN so that we could take Lucy home.  We signed the discharge papers Tuesday afternoon after our urology team came up and changed Lucy's surpapubic catheter bedside.

It was pouring rain when we were leaving the hospital which didn't help our excessive fatigue.  Instead of going back to the office Drew and I met at home, transferred Lucy to her bed, and we all crashed hard!  Fear not our other kids were in good hands, on my way home I called my dear friend Alicia and asked her if she could keep the big kids for a few more hours.  Being tired, it goes along with this so called crazy life, but seriously I have never seen my husband so tired in all of our years together(23 years collectively).  He blamed it on the mulching :).

When I picked the kids up at 7:00pm they were wiped out from Wipe Out Camp. Sophie was beyond tired and lo and behold I discovered that she also had a fever.  She later confessed to me that she did not feel good all day, but did not want to bother anyone about it.   Poor girl, she and I both felt awful!

On the short drive home from Alicia's there was a flood of tears from everyone.  Not sure if it was the combination of fatigue, hunger, and stress of the past few days but suddenly everyone was crying about how they missed the "old Lucy" the way she used to be...all I could say was, "me too"!

Wednesday morning everyone was up and out the door early, except of course for Lucy, and Sophie too as she still had a fever.  I put Sophie on "isolation" and told her she had to stay in her room and then handed her an iPad.  She was the happiest febrile kid on isolation I had ever seen :).  Later Wednesday morning Lucy lost her first tooth!  Her two bottom teeth have been loose for awhile, that's what having very little calcium in your diet will do to you, but also she is the age for having loose teeth.  Without going into any detail, her loose tooth prompted a need for a gj-tube change Wednesday afternoon.  Seriously, we had to pack up her up and take this show back on the road to DuPont.  But not before first picking up the kids from camp and making arrangements with one of our favorite child life workers at the hospital to sit with them while Luc, her nurse, and I went to interventional radiology.  FYI by noon Sophie's fever was a thing of the past and she was hungry, all good signs that things had improved.

On Thursday we celebrated fifteen years of marriage, the weather was gorgeous!  While the kids were at camp we packed up our sleepy girl and took her and her mobile ICU on walk (oh yes we did!) at Longwood Gardens, my favorite date place!  This deserves a post of its own, but I know I won't have the time to give to it so I will just say that I can't imagine spending my life with anyone else.  Life is good, not easy, but good!

We were able to squeeze in a dinner date on Thursday for our anniversary, sushi.  On Friday night we had a "date" at Costco, not my favorite date place.  Drew always likes to say to me when were at Costco, "Hey babe, I'll buy you dinner...", very funny.  Cheap date, aah not really when you tally in our $400.00 grocery receipt.

Drew took the end of the week off to celebrate our anniversary and to also get some things done around here, like spreading mulch:).  By Monday I think he was ready to go back to his job and leave me to do mine.  While driving home from Costco Friday night we commented that this has been the longest week, it's felt like a century, but then realized that we still had the weekend.

Bitter Sweet Homecoming...

June 19, 2013
After what I believe was one of the shortest hospital stays in the history of hospital admissions for us, we came home.

Lucy is not any better than when we brought her through those doors yesterday afternoon.  Truth be told, she really isn't going to get any better.

There was nothing too outstanding in Lucy's lab work that indicated to us that there is something treatable going on with our girl.  Sadly, what we are seeing in Lucy is as a result of her disease progressing...her body is getting tired.

I could see the love and concern on the faces of so many who know and care for us,  who love our girl, as they came by to visit with us today.  Lucy is different, but still Lucy, just different.  It's so hard to explain, much less try to put into words.  But when you see can see exactly what I am unable to describe in words.

The good doc came in this morning to talk to me even thought he wasn't scheduled to be at the hospital today.  Lucy cried when she saw him, oddly that made us all feel a little better.  He shared with me that this, going through the end of life with our girl, is going to be difficult...confusing...frustrating...painful.

He sees what we are seeing and we share similar feelings on the matter.  He told me to take advantage of the time we do have with her, and keep on doing what we do best.

Afterward, he put his arm around my shoulders and asked me, "Do you want to go home?", to which I replied, "yes".

It is a bitter sweet homecoming....but there's no place like home.


June 18, 2013

Things with Miss Lucy have not been good.  Sadly the boost we were hoping to get from the blood transfusion two weeks ago was not the answer to her problems, not that we really thought that it was.  Lucy has numerous issues, and as our wise(aleck) doc pointed out to me tonight when I asked him what he thought could be causing her most recent issues he responded with, "Do you mean mitochondrial disease?".

We are currently sitting in the ED waiting for a bed upstairs.

Lucy has declined neurologically over the past month, but even more so over the past few days.  In addition to sleeping all of the time, she is weak, slow, "out of it" looking.  Her eyes are different, she has a glossy eyed look about her now most of the time.  Even more dramatic is her decrease in muscle tone, she was weak before, but now it's even worse!  We are suspicious that she may have suffered a possible metabolic stroke.  Unlike a typical stroke which can be detected via a CT scan metabolic strokes can not, there really is no way of knowing for sure other than symptoms and lab work.  Her CT scan looked normal, aside from brain atrophy which is nothing we didn't already know.

We are looking into other possibilities, but at the moment there is so much uncertainty.  Blood and urine cultures are cooking, and labs of all sorts have been ordered.  We will discuss things in the morning with our doc.  As always we are praying for clarity, and for something treatable.

A much needed boost...

June 4, 2013
Since having surgery seventeen days ago, this has pretty much been the scene around our house...

Sleeping Beauty is certainly living up to her name, sleeping up to 24 hours some days!  Sleepy, sleepy, sleepy Lucy.
We are not sure yet what to make of all of this, but there has been a lot of talk about disease progression...sigh.  This latest surgery appears to have taken a lot out of our girl!

  We are looking for something, anything...OK almost anything, that will give our girl a boost.

Today we are spending the day at the hospital for clinic appointments and a much needed boost - a blood transfusion.  
When we arrived in clinic I told Dr. k if he wanted to see her awake he'd better come quick.  
He missed it.

(The glove, it's filled with "hanitizer" aka hand sanitizer, usually we use urine specimen cups cause they have lids!  Lucy treats the hanitizer dispensers around the hospital like they are drink refill stations.  Oh yeah, she's obsessed!)

When Lucy did wake, she kept asking to go to day med, what she really wanted was to lay down and take a nap.

She was overtired when we finally arrived, but after settling in she is fast asleep.  Blood is infusing ever so slowly into our girl so as not to fluid overload her. 

(The Diet Coke bottle she is sleeping with is my much needed boost, the dark red tubing connected to her central line, her much needed boost;)

Oh, the hours and hours of infusions that we sit through...and will continue to sit through for as long as we can!

Here's hoping that these packed red cells are just the boost she needs!
Thanks to those of you who give blood, your efforts help to save lives, we appreciate that!